Autism group receives $1.2 million to create statewide registry, network

The Rhode Island Consortium for Autism Research and Treatment, known as RI-CART, announced Monday that it had received a $1.2 million grant to create a first-of-its-kind confidential registry of every individual diagnosed with autism in Rhode Island.

EAST PROVIDENCE – The Rhode Island Consortium for Autism Research and Treatment, known as RI-CART, announced Monday that it had received a $1.2 million grant to create a first-of-its-kind confidential registry of every individual diagnosed with autism in Rhode Island.

The award from the Simons Foundation will help the consortium of researchers, clinicians and hospitals create a statewide data and resource continuum for thousands of children and adults with autism spectral disorders.

The registry project, first reported by Providence Business News on Aug. 5, is also supported by funds from the Brown University Institute for Brain Science, the Norman Prince Neurosciences Institute, and the Warren Alpert Medical School Department of Psychiatry and Human Behavior.

During the next three years, RI-CART hopes to enroll more than 1,000 children and adults with autism, researchers said. This will be the first step in the long-term goal of enrolling all individuals with autism in Rhode Island in this research network.

“This effort will link families and researchers to spur important and innovative research on the causes and treatments for individuals with autism and related conditions,” said Stephen Sheinkopf, a clinical researcher at Women & Infants Hospital, assistant professor at The Warren Alpert Medical School of Brown University and co-director of the RI-CART project. “As a partnership between researchers and families, the RI-CART resource will be a uniquely collaborative approach to research.”

As part of the program, members of the RI-CART team with advanced training in autism assessment will offer to administer the Autism Diagnostic Observation Schedule to each individual enrolled in the project. Only a fraction of individuals with autism in Rhode Island currently have access to the ADOS, which is considered the “gold standard” measure of autism symptoms.

Offering the ADOS to all children and adults with autism could greatly improve the accuracy of autism diagnoses, as well as potentially improve the treatment that families receive. Participants will also have access to resource staff who can provide information on autism and available services, and who can help connect families to resources in the community.

Rhode Island’s size, its history of serving families with developmental disabilities, and its strong record of working collaboratively across academic, government and private sectors are important assets for the new efforts, according to RI-CART officials. Team members will be able to travel to clinics, service providers and even homes to help enroll people and facilitate ongoing participation. This kind of “face-time” between families and researchers is planned to be the RI-CART trademark and may represent an unusual contribution that Rhode Island can make to autism research, according to Dr. Eric Morrow, an assistant professor in biology at Brown University and genetics researcher at Bradley Hospital.

This project is a pilot, but in the future, RI-CART researchers hope to help inspire this approach at other sites and form collaborative networks across the nation.

“The Framingham Heart Study – through collaboration between a community and researchers – helped identify many of the major causative factors and characteristics of heart disease,” said Morrow, who is the principal investigator on the Simons grant. “While there has been much hopeful progress in autism research in recent years particularly as a result of ambitious team science, we are behind in our understanding and treatment by comparison to other medical conditions, such as heart disease.”

Working with his co-leader Sheinkopf, Morrow said the project will also collect DNA, and other bio-samples, including those that will allow studies of environmental exposures.

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